doubt creeping in now...: I had my gynae... - Endometriosis UK

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doubt creeping in now...

foursimplewords profile image
19 Replies

I had my gynae appt on Friday and he was filling out the form in front of me to request a lap, which made it all feel quite real.

I'm now convinced it's all in my head and they're not going to find anything. I don't have it half as bad as people on here. It's mainly IBS symptoms, always bloated and tired, small appetite (feeling sick and struggling to finish meals), plus extremely painful periods (mainly day 1 and 2, when it starts it will wake me up at night), plus random stabbing pains in my lower pelvis a few times a month. I also get pain during sex (it feels like being put on a skewer, lol!)

I don't want to wish endo upon myself but I'm worried they aren't going to find anything and I would have put myself through an op for nothing. They haven't been able to find any 'nodules' on examination, either.

Has anyone been in a similar situation to me, and they did find endo? I'm not in crippling pain all month round. Feel like a fraud.

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foursimplewords
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19 Replies

I was in a similar situation and none was found in my lap but it's the only way to rule it out to start looking at other things, now having my bowels investigated and things looked into now they can say it's not endo (or so they can see)! x

Your symptoms sound very similar to mine and I was diagnosed with stage 4 xxx

foursimplewords profile image
foursimplewords in reply to

oh gosh what were your main troubles x

in reply to foursimplewords

Very heavy painful periods. Bloated uncomfortable tummy even when not on period, bowel issues. Extreme fatigue and brain fog. Anaemia. Was finally referred to gynaecologist when I started bleeding very dark blood all month long, I think by that time both myself and GP thought I might have cancer (I didn’t, thank goodness) xxx

AmyMillie profile image
AmyMillie

Hi, I feel the same. Some women’s stories are absolutely horrific and I don’t have it nearly as bad, although it does affect my life. I haven’t had a diagnoses yet either. I have an appointment with a gynaecologist tomorrow (technically today - I can’t sleep tonight I’m feeling anxious about it!). My scan results have showed nothing, and I feel like I won’t be believed, but I also feel embarrassed to push it further in case it’s not endo! It’s a horrible confusing time isn’t it. I really hope your laparoscopy goes well and you get the answers you need xx

foursimplewords profile image
foursimplewords in reply to AmyMillie

how did your appointment go?

AmyMillie profile image
AmyMillie in reply to foursimplewords

I’m on the waiting list for a lap now! Have to say I was quite surprised that I didn’t really have to push for it. I’m in the same boat as you now! On the one hand I don’t want to wish anything bad like endo on myself... but on the other hand I’d like them to find something so that I can prove to myself that it’s not all in my head!

foursimplewords profile image
foursimplewords in reply to AmyMillie

good luck hun, did they suggest how long your wait would be?

AmyMillie profile image
AmyMillie in reply to foursimplewords

My pre op is already booked in for 12th April so I’m guessing it won’t be too long after that! Which is a bit awkward tbh though as I have a lot work of commitments at the mo and a holiday abroad in the first week in June...

Always the way though isn’t it! Have you got your date through yet? Any news on pre-op?

foursimplewords profile image
foursimplewords in reply to AmyMillie

Nothing yet x

Peren profile image
Peren

I think how you feel is very common. I felt exactly the same and I was diagnosed stage 3. Like the others say, if nothing else it will rule it out and they can investigate other avenues. Either way it sounds like it’s worth them taking a look. Food luck.

foursimplewords profile image
foursimplewords in reply to Peren

thank you - what were your symptoms if you dont mind me asking?

princessk09 profile image
princessk09

I’m having the same doubt as I’ve just been put on the waiting list for a lap. I have similar symptoms to you but my pain is all month and horrendous during my period and ovulation. I have bloating, tiredness, nausea and painful sex and lower back pain all the time.

My scan showed nothing but an endo specialist suspects it. Scans don’t show endo a lot of the time and some people don’t have really bad pains etc but have endo.

sarahjoanne profile image
sarahjoanne

Honestly it’s a good thing you’re getting seen sooner rather than later. I had similar symptoms as you all of last year, until in late September my condition worsened dramatically- I couldn’t stand up for five minutes. But because I’d had fairly manageable symptoms I hadn’t pushed for treatment, so even going privately it took a month of excruciating pain before I finally had my lap. I’m not saying this to scare you or anything, just so that you don’t make the same mistake I did and get complacent. It’s so easy with something like endo to convince yourself that it’s all in your head, but the symptoms you’re experiencing are real and worthy of treatment.

I hope it all goes well for you.

foursimplewords profile image
foursimplewords in reply to sarahjoanne

Thank you x ironically the pain has been worse recently but part of me just thinks it's because I'm now hyper aware of anything x

Hi foursimplewords,

Your symptoms do sound a lot like endo - it sounds sensible for them to do a lap. Like I said on another thread - with endo we are so quick to dismiss our pain. If a man was in this level of pain, would he be told it's all in his head? Nope!

Even if they didn't find anything - what's the worst that could happen? It would then give you the opportunity to look elsewhere for the cause of your symptoms. On the flipside, if they did find endo they would hopefully be able to treat it surgically and give you some relief.

Good luck with everything and we're here on the forum if you need us!

foursimplewords profile image
foursimplewords in reply to

thank you x

Oh sweetie it’s so difficult.

I had my endometriosis symptoms return after my first laparoscopy ( after I lost a baby) lots of medics dismissed my notion of the endometriosis returning so soon; they said it was unlikely and probably my miscarriage settling down. I knew it had re grown.Luckily my fertility specialist took my concerns seriously and did all my referrals ; I had my second laparoscopy two weeks ago today and guess what? It was back! I was like you really doubting myself and thinking I was going mad 🤦🏼‍♀️ the gynaecologist who did my second lap said” it can and often does grow back its not curable “. Unfortunately some was on my bowel so I’m now been referred to an endometriosis specialist . My point is back your gut instinct ; you know your body better than any doctor does 😊 Make sure the surgeon doesn’t only check your pelvic organs;endometriosis can grow on other organs such a bowels. By the way I also have bowel issues as well as gynaecological ones.

Good luck with your laparoscopy hope it goes well ❤️ xoxo

foursimplewords profile image
foursimplewords in reply to

thank you xx

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